Seeking, and finding, answers, comfort, and hope

As someone affected by a rare, incurable disease, Joe Mondloch and his wife Sue are always on the lookout for new information. The autoimmune neurological condition Joe lives with has left him blind in one eye, physically disabled, and poses an ongoing threat for further damage.

Called MOGAD, which stands for myelin oligodendrocyte glycoprotein associated-antibody disease, the rare, immune-mediated illness has been present in Joe’s life since February 2016, when, at the age of 55, he experienced his first symptom flare. In the past seven years, Joe has experienced five more episodes, each one leaving a permanent mark on his body. The illness — a type of central nervous system demyelinating disease — not only causes vision loss but also pain, cognitive issues, numbness, weakness, fatigue, paralysis, and even death if left untreated.

For the Mondlochs, who live in the Twin Cities, access to trustworthy information about Joe’s disorder is essential to help them make informed decisions about Joe’s care. Earlier this year, Sue’s online investigations led her to The MOG Project and some hopeful perspectives on Joe’s illness.

The MOG Project, a grassroots, nonprofit patient advocacy organization, aims to connect affected individuals with medical information and resources to improve their lives. It’s supported by a medical advisory board, which consists of the world’s foremost MOGAD experts and includes four Mayo Clinic physicians: John Chen, M.D., Ph.D., Eoin Flanagan M.D., B.Ch., Sean Pittock, M.D., and Cristina Valencia Sanchez, M.D., Ph.D.

“I was looking for answers and thought, ‘Hey, there’s got to be a support group out there,’ so I looked on Facebook and there they were,” Sue says. “I clicked on The MOG Project and found out which doctors are involved and what research is going on, and it really opened my eyes to what’s going on out there. I told Joe we needed to go back down to Mayo Clinic and get this re-checked and get more opinions.”

In early June 2023, Joe met with Drs. Flanagan and Chen at Mayo Clinic. The appointment, say the Mondlochs, reinforced the importance of access to leading-edge information, clinical trials, and experts who are on the front lines of scientific discovery.

“THESE DOCTORS ARE TOP-NOTCH AND INVOLVED IN ALL OF THE RESEARCH,” JOE SAYS. “THEY ARE CONFIDENT IN EVERYTHING THEY SAY, AND THEY BUILD CONFIDENCE IN YOU.”

At the forefront of a newly identified disease

The Mondlochs are not strangers to Mayo Clinic. They initially sought care for Joe there at the beginning of his disease journey.

“We initially saw Mr. Mondloch in 2016 when our understanding and testing for MOGAD was still in its infancy,” explains Dr. Chen. “Mr. Mondloch had both optic neuritis, which is inflammation of his optic nerves, and myelitis, or inflammation of his spinal cord. This presentation mimicked neuromyelitis optica spectrum disorder (NMOSD).”

Joe’s Mayo Clinic testing for the NMO antibody came back negative; however, his testing journey continued.

“FORTUNATELY, OUR NEUROIMMUNOLOGY LAB WAS WORKING ON THE MOG ANTIBODY ASSAY AND WE WERE ABLE TO TEST AND CONFIRM HIS DIAGNOSIS OF MOGAD IN THE RESEARCH LAB, WHICH WAS OVER A YEAR BEFORE WE STARTED OFFERING THE MOG ANTIBODY ASSAY COMMERCIALLY,” DR. CHEN SAYS. “WHEN MAYO CLINIC LABORATORIES’ MOG ASSAY WAS LAUNCHED AT THE END OF 2017, IT WAS THE FIRST IN THE UNITED STATES TO IDENTIFY MOG-ASSOCIATED ANTIBODIES.”

After receiving confirmation through Mayo Clinic testing that Joe had MOGAD, the Mondlochs opted to seek care closer to home to manage Joe’s continual flares. Treatment for the episodes typically required a hospital stay, during which high-dose intravenous steroids were administered in addition to several rounds of plasmapheresis. During this lengthy process, Joe’s blood was removed, rapidly spun through a centrifuge to separate the harmful MOG-antibodies, and then returned to his body.

Joe was put on twice-yearly infusions of rituximab in an attempt to stop his relapses.However, he continued to have multiple flares despite therapeutic doses of rituximab. Largely because of work led by Dr. Chen and Dr. Flanagan at Mayo Clinic demonstrating that maintenance intravenous immunoglobulin (IVIG) therapy is effective in preventing relapse in MOGAD,¹ IVIG was added to Joe’s treatment after his last flare in 2021. He has not had any relapses since starting on IVIG.

The addition of these therapies to Joe’s treatment regime compelled Sue to consider whether Joe was on the best path forward and to seek more information about MOGAD.

“When I got on the MOG support group page, it opened my eyes up to a lot more of the things that are going on and who the doctors are who are front and foremost for this,” Sue says. “Because of that, we decided to get a second opinion. In the last six years, a ton of research has furthered doctors’ knowledge, and we were very excited to go back to Mayo and get on a good track and make sure we can do anything we can to help Joe and to keep him from flaring up anymore.”

Better equipped to face the future

When they came back to Mayo Clinic in June 2023, the Mondlochs expressed their concerns about another relapse to Dr. Flanagan and Dr. Chen. They also shared their worry about Joe’s ongoing symptoms, which include weakness, fatigue, numbness and tingling in his chest, legs, and feet, as well as uncontrolled leg spasms.

During the appointment, Dr. Flanagan shared information on tools and therapies that could improve Joe’s quality of life, such as physical and occupational therapy. He also discussed ongoing and future clinical trials, one of which the Mondlochs hope to pursue.

In addition, Dr. Flanagan recommended that Joe enroll in a new research trial referred to as “steroid in my pocket.” As part of the program, Joe has been prescribed 50-milligram prednisone tablets. At the first sign of a flare-up, he can take the medication to stop the attack. Dr. Chen and Dr. Flanagan have been using this protocol for a couple of years and it appears to be effective in preventing additional permanent damage from an attack if the steroids are given early.

“Dr. Flanagan said this could be a lifesaver because Joe knows what it feels like when an episode is coming on and by having the prednisone accessible, he can start treatment right away and not lose ground,” Sue says. “Every flare-up can leave a mark and add disability.”

For Joe and Sue, knowing that everything that can be done is being done is reassuring.

“THE MAYO DOCTORS, FOR SOMETHING SO COMPLICATED, THEY MAKE IT AS EASY AS POSSIBLE,” SUE SAYS. “THE DOCTORS ARE AT THE TOP OF THEIR FIELDS — AND IT JUST MAKES YOU FEEL REALLY GOOD THAT WHEN YOU’RE TALKING TO THE DOCTORS THEY KNOW EXACTLY WHERE YOU ARE AT AND CAN HELP. IT GIVES YOU A LOT OF HOPE, IT CALMS YOU, AND YOU REALLY FEEL LIKE YOU’RE IN GOOD HANDS.”

For Joe and others like him with complex rare conditions, integrated healthcare, such as the collaboration between neuroimmunology, neuro-ophthalmology, physical medicine, and rehabilitation are crucial for correct diagnosis and treatment.

“To be successful, it takes having a cutting edge neuroimmunology lab and also patients like Mr. Mondloch who are willing to participate in research, which, when combined, can lead to breakthrough discoveries that we can directly apply to the care of our patients,” Dr. Chen says.

To learn more about The MOG Project visit https://mogproject.org.

This article originally ran on the Mayo Clinic Laboratories blog.

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